Winfield’s Madi Moore, left, started the Friends of Lilly Foundation for her sister, Lilly, right, who has epilepsy. They are training their dog, Oliver, to be Lilly’s service dog.

Submitted photo

By Becky HopfSpecial to The Tuscaloosa News

Published: Tuesday, September 3, 2013 at 9:00 p.m.

Last Modified: Tuesday, September 3, 2013 at 11:42 p.m.

There are days when Lilly Moore feels ostracized, like she just doesn’t fit in.

“There are all these cliques at school, and it’s hard to make friends,” the 13-year-old Lilly said. “I’ve had trouble in the past where I’ve made friends, and then I have a seizure, and they just quit.”

Lilly has epilepsy. She has seizures almost daily, though mostly they are minor and brief in duration. She likens it to completely zoning out, lapsing into moments when she doesn’t see or hear anything, just stares straight ahead before she snaps back. Occasionally, she has tonic-clonic seizures, which, her mother, Meredith Moore, says, are more severe and can cause her to convulse and fall to the floor.

“I’ll make friends with somebody and everything will be going great, and then I’ll have a seizure in front of them, and it scares them off,” said Lilly, who was diagnosed at age 3. “The seizures have made me want to work harder. People have picked on me because of the seizures. I’ve been bullied about it.”

It was the pain of seeing what the younger of her two children was going through that found Meredith Moore sharing her concerns on the phone with her older daughter, Madi.

Madi, an all-state pitcher from Winfield who was The Tuscaloosa News’ 2013 Softball Player of the Year, was with one of her Birmingham Thunderbolts travel softball teammates in Boston one weekend last winter, visiting colleges. Her mother confided to Madi the hard time Lilly was having at school, how Lilly felt left out and was missing out on common childhood experiences such as slumber parties because her friends — and sometimes their parents — worried about her having a seizure. Sometimes, the parents, it seemed, could be even more judgmental than the children.

Madi hung up the phone and immediately went to work. She and her travel ball teammate, Mountain Brook all-state catcher Courtney Shea, had just been talking about college and their futures and how they wanted to start a nonprofit. Her mother’s phone call gave Madi the answer.

Shortly after, she and Courtney filed the necessary paperwork required to establish a nonprofit, and the Friends of Lilly Foundation, “Changing the Stigma of Epilepsy One Friend at a Time,” was founded.

“It’s still a work in progress because of how busy we were with softball this summer and now school has started back,” said Madi, 16 and a junior who has verbally committed to play at Alabama. “Our main thing right now is to raise awareness, to say epilepsy is not all that bad, because look at my sister: She has it and she’s doing all these amazing things. She’s very active. She’s smart. We’re trying to show that people living with epilepsy can live normal lives, just like everybody else.”

Lilly is the perfect face for that message. The Winfield Middle School seventh-grader, like her older sister, is a pitcher. She also plays volleyball and basketball.

“I was surprised when I heard about it,” Lilly said. “I’m really happy about it. I think it’s a good thing that she did. I want other people to recognize epilepsy because some people don’t even know that other people have it, too. Maybe it will help people learn that there are a lot of people like me who have epilepsy and that we’re not different. We do have our struggles, but you can work through it. People shouldn’t be afraid to be around us.”

George Hennicke is Madi’s coach at Winfield. He’s also coached Lilly.

“It’s really heartwarming. It shows they’ve got their priorities in life,” Hennicke said. “It’s amazing to me that as Madi is competing and going through the things she needs to do to fulfill her dream of playing college softball, she’s also looking out for her sister. It’s so important that this knowledge gets out, and they’re the perfect messengers. They’re great people.”

In April, Lilly and Meredith Moore traveled to Washington, D.C., to participate in the National Epilepsy Walk. They did it in honor of Lilly’s “Seizure-versary,” marking 10 years since her first seizure. Meredith Moore has family and friends nearby, 17 of whom joined in the walk. She saw Lilly blossom there before her very eyes.

“I met people who go through what I go through,” Lilly said. “It made me feel like I wasn’t the only one out there.”

Lilly also discovered the existence of seizure dogs. While she was petting one, she had a minor seizure. Another dog, Snowball, immediately rushed over and licked Lilly’s face to wake her. Now the family is training their dog, Oliver, a Goldendoodle, to be her service dog.

Madi has big plans in store for Lilly’s foundation, including fundraisers. One, in honor of both sisters being pitchers, is a softball event called “Strike Out Epilepsy.” They want to donate to hospitals for epilepsy-geared equipment and technology, train service dogs and launch teaching campaigns on acceptance of those with epilepsy and even steps to take when someone has a seizure.

“My sister supports me,” Lilly said. “She wants to help. Like she helps me get ready in the morning and stuff. She lays out my clothes for me, and she helps with my medicine. She’s there for me when I need her.”

<p>There are days when Lilly Moore feels ostracized, like she just doesn't fit in. </p><p>“There are all these cliques at school, and it's hard to make friends,” the 13-year-old Lilly said. “I've had trouble in the past where I've made friends, and then I have a seizure, and they just quit.”</p><p>Lilly has epilepsy. She has seizures almost daily, though mostly they are minor and brief in duration. She likens it to completely zoning out, lapsing into moments when she doesn't see or hear anything, just stares straight ahead before she snaps back. Occasionally, she has tonic-clonic seizures, which, her mother, Meredith Moore, says, are more severe and can cause her to convulse and fall to the floor.</p><p>“I'll make friends with somebody and everything will be going great, and then I'll have a seizure in front of them, and it scares them off,” said Lilly, who was diagnosed at age 3. “The seizures have made me want to work harder. People have picked on me because of the seizures. I've been bullied about it.”</p><p>It was the pain of seeing what the younger of her two children was going through that found Meredith Moore sharing her concerns on the phone with her older daughter, Madi. </p><p>Madi, an all-state pitcher from Winfield who was The Tuscaloosa News' 2013 Softball Player of the Year, was with one of her Birmingham Thunderbolts travel softball teammates in Boston one weekend last winter, visiting colleges. Her mother confided to Madi the hard time Lilly was having at school, how Lilly felt left out and was missing out on common childhood experiences such as slumber parties because her friends — and sometimes their parents — worried about her having a seizure. Sometimes, the parents, it seemed, could be even more judgmental than the children.</p><p>Madi hung up the phone and immediately went to work. She and her travel ball teammate, Mountain Brook all-state catcher Courtney Shea, had just been talking about college and their futures and how they wanted to start a nonprofit. Her mother's phone call gave Madi the answer.</p><p>Shortly after, she and Courtney filed the necessary paperwork required to establish a nonprofit, and the Friends of Lilly Foundation, “Changing the Stigma of Epilepsy One Friend at a Time,” was founded. </p><p>“It's still a work in progress because of how busy we were with softball this summer and now school has started back,” said Madi, 16 and a junior who has verbally committed to play at Alabama. “Our main thing right now is to raise awareness, to say epilepsy is not all that bad, because look at my sister: She has it and she's doing all these amazing things. She's very active. She's smart. We're trying to show that people living with epilepsy can live normal lives, just like everybody else.”</p><p>Lilly is the perfect face for that message. The Winfield Middle School seventh-grader, like her older sister, is a pitcher. She also plays volleyball and basketball.</p><p>“I was surprised when I heard about it,” Lilly said. “I'm really happy about it. I think it's a good thing that she did. I want other people to recognize epilepsy because some people don't even know that other people have it, too. Maybe it will help people learn that there are a lot of people like me who have epilepsy and that we're not different. We do have our struggles, but you can work through it. People shouldn't be afraid to be around us.”</p><p>George Hennicke is Madi's coach at Winfield. He's also coached Lilly.</p><p>“It's really heartwarming. It shows they've got their priorities in life,” Hennicke said. “It's amazing to me that as Madi is competing and going through the things she needs to do to fulfill her dream of playing college softball, she's also looking out for her sister. It's so important that this knowledge gets out, and they're the perfect messengers. They're great people.”</p><p>In April, Lilly and Meredith Moore traveled to Washington, D.C., to participate in the National Epilepsy Walk. They did it in honor of Lilly's “Seizure-versary,” marking 10 years since her first seizure. Meredith Moore has family and friends nearby, 17 of whom joined in the walk. She saw Lilly blossom there before her very eyes.</p><p>“I met people who go through what I go through,” Lilly said. “It made me feel like I wasn't the only one out there.”</p><p>Lilly also discovered the existence of seizure dogs. While she was petting one, she had a minor seizure. Another dog, Snowball, immediately rushed over and licked Lilly's face to wake her. Now the family is training their dog, Oliver, a Goldendoodle, to be her service dog.</p><p>Madi has big plans in store for Lilly's foundation, including fundraisers. One, in honor of both sisters being pitchers, is a softball event called “Strike Out Epilepsy.” They want to donate to hospitals for epilepsy-geared equipment and technology, train service dogs and launch teaching campaigns on acceptance of those with epilepsy and even steps to take when someone has a seizure. </p><p>“My sister supports me,” Lilly said. “She wants to help. Like she helps me get ready in the morning and stuff. She lays out my clothes for me, and she helps with my medicine. She's there for me when I need her.” </p><p>Said Madi: “She knows I have her back, and I know she has mine.”</p>